Peg B
Distinguished member
- Joined
- Nov 5, 2006
- Messages
- 414
- Reason
- PALS
- Diagnosis
- 10/2006
- Country
- US
- State
- Michigan
- City
- Flint
Hi,
I have DX of "MMN or Atypical ALS." I was first DX with ALS in Oct 2006. Dec 2006 U of Michigan ALS clinic said possible MMN - not sure. I started IVIG in January 2007. Revisit April and continued on IVIG X2 a month. Finger is atrophied on dominate hand (R) but since treatment I can move it a bit to the right, but not to the left. Borderline conduction block at elbow. My EMG is abnormal at three limbs in Dec 06. I have trouble walking more than a block or so without a cane, trouble with stairs, and great dificulty writing - even a check. Stopped working November 2006 and retired March 1, 2007 (36.2 years in public education). I am receiving full retirement and Long Term Disability.
I applied for SSD and now need to see SSD Dr. to verify disability status with MNN. They are not asking about the ALS part even though I have stressed the TERI law with them. Any suggestions besides taking all my paper work? What are they looking for really? I am 58. My neurologists say we have to wait to see which symtoms really show up before we know for sure which DX is correct. Meanwhile I continue to get IVIG treatment. Thanks for any help. Peg
I have DX of "MMN or Atypical ALS." I was first DX with ALS in Oct 2006. Dec 2006 U of Michigan ALS clinic said possible MMN - not sure. I started IVIG in January 2007. Revisit April and continued on IVIG X2 a month. Finger is atrophied on dominate hand (R) but since treatment I can move it a bit to the right, but not to the left. Borderline conduction block at elbow. My EMG is abnormal at three limbs in Dec 06. I have trouble walking more than a block or so without a cane, trouble with stairs, and great dificulty writing - even a check. Stopped working November 2006 and retired March 1, 2007 (36.2 years in public education). I am receiving full retirement and Long Term Disability.
I applied for SSD and now need to see SSD Dr. to verify disability status with MNN. They are not asking about the ALS part even though I have stressed the TERI law with them. Any suggestions besides taking all my paper work? What are they looking for really? I am 58. My neurologists say we have to wait to see which symtoms really show up before we know for sure which DX is correct. Meanwhile I continue to get IVIG treatment. Thanks for any help. Peg